If one thing is clear from speaking with Steven Mozian’s parents and sister, it is that this son and brother made the most out of his short, 33-year life. Steven had a contagious laugh and a quick wit — two characteristics that carried him through the challenges he faced living with cystic fibrosis, a genetic lung disease that causes mucus buildup that can lead to infections and ultimately a decreased life expectancy.
After Steven’s diagnosis at 4 months of age, UNC Hospitals quickly became a regular part of the Mozian family’s life. The routine of visiting UNC for clinic days began when Steven was 2 and continued until he moved to Florida at the age of 30. Even after leaving North Carolina, Steven maintained his connection to UNC, testing out new medical devices in his 30s and sharing feedback with Dr. Scott Donaldson.
“I believe to this day that he was as healthy as he was because of UNC,” says his mother Karen. She adds that the ease of UNC visits helped bring a sense of normalcy to their household. Steven played T-ball and soccer as a child and even took up the tenor sax in middle school, continuing on to play in high school marching band.
“Our philosophy was that if it was within reason, we let him run with it,” says his father.
For Steven, normalcy meant not being defined by his disease. He chose to tell very few people that he was suffering from cystic fibrosis, and relied on his wit and creativity to cover up potential indicators of his disease. While hospitalized with a lung infection as a teenager, he told the high school classmates visiting him that he was sick with the bird flu. As he got older and needed more regular breathing treatments, he devised a contraption in his car that allowed him to watch movies while taking in a one-hour breathing treatment over his lunch break.
Normalcy became increasingly difficult for Steven as he entered his 30s and began to face the financial hardships that often come with living with a chronic disease. Steven wasn’t able to secure medical insurance and often had to choose between paying for medicine and breathing devices or paying for rent.
After Steven died at the age of 33 in July 2013, Karen’s sister, Leslie Taylor, who Karen describes as a “true philanthropist,” established the Steven Mozian G. Patient Care Fund in Steven’s honor at UNC. The fund provides financial assistance to cystic fibrosis patients who are in the position that Steven was at the end of his life—having to decide between paying for treatment or paying for basic needs. Cystic fibrosis patients often rely on nebulizers, or airway clearing devices, to keep their air passages clear of mucus. Most insurance companies and all Medicare and Medicaid funds will only pay for 1 nebulizer every 3-5 years. However, a patient who relies on the nebulizer for everyday use will need a new device after 6 months. Steven’s Fund provides nebulizers to those patients who otherwise couldn’t pay out of pocket for the devices.
“Steven wanted to have a life of service,” says Leslie. “He understood the importance of being a part of what helps others heal, which is why he tested new medical devices for his physician. So, after he died, we wondered: ‘What would Steven do?'”
Leslie says it was immediately clear that funding the supply of airway clearing devices was the greatest way to keep Steven’s memory alive, while making a transformational impact on cystic fibrosis patients in need.
“Steven didn’t want to have to ask people for money,” says Melissa, Steven’s sister, who eventually moved in with Steven and his fiancée in Florida to help cover the cost of rent. “It means a lot that there’s a resource with Steven’s name on it that can help people maintain their health.” She adds that it is particularly meaningful because Steven was involved in testing these airway devices towards the end of his life.
To date, the Steven G. Mozian Patient Care Fund has purchased 300 airway clearing devices for patients in need.
“It’s been remarkable, and it’s exactly what we want to do,” says Karen. Through the Fund, the Mozians are hopeful that adults with cystic fibrosis can have some of the normalcy that Steven was searching for during his short—but very full—life.
To make a gift to the Steven G. Mozian Cystic Fibrosis Patient Care Fund, please click here.